6 Reasons Why Self Diagnosis is Valid and IMPORTANT
If you or someone you love have, or is going through circumstances that necessitate some form of self-diagnosis, welcome to Validation City.
By the end of this video, you'll know why self-diagnosis is both a valid and important. So you can give yourself the validation you deserve, or you can give your friend or family member the validation they so very much deserve.
Watch the video below or read on for the full transcript.
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So, who am I to talk about self-diagnosis?
I went undiagnosed with Postural Orthostatic Tachycardia Syndrome and the Hypermobile Ehlers-Danlos Syndrome for fifteen (15) years.
And didn't arrive at those diagnoses until I discovered them myself.
And then, because I had the privilege to, got those diagnosed officially by my doctor.
And my journey with mental illness and neurodivergence diagnoses has followed a similar path.
I want to share with you why self-diagnosis has been a vital part of my journey. So let's get started.
Reason number one (1), you and you alone are the authority on your experience inside your mind and body.
One of the things that has been so difficult in my journey has been gaslighting by adults, authority figures, and especially medical professionals who have dismissed my experience inside my body and my mind.
This was particularly traumatic when I was a child.
I'm just here to remind you that you know what's going on in your body. I am so sorry that people don't automatically believe you.
And for those of you who are likely going to be playing devil's advocate in my: comments, it is so rare for someone to make shit up for attention. It is so rare.
I would rather believe everybody so the people who need help and support and validation get it and let the few rare, bad apples just get the attention they're just screaming for than unnecessarily traumatizing and hurting people who so desperately need help.
Reason number two (2) official diagnosis is often completely inaccessible financially.
Particularly for those of us here in the United States, we don't have single payer healthcare and insurance costs so much money.
Like for example, there's a particular neurodivergence diagnosis that I'm curious about for myself, but the thought of trying to find a doctor who could diagnose me ... there's just ... there's just too much that would go into that ... and (ponders the void in American) I am terrified to know how much that would cost.
It's not hurting anyone for me to self-diagnose myself. Instead it is helping me.
I am better able to manage my neurodiversion experience with the self-diagnosis as a lens to care for myself.
So I'm not hurting anyone.
If you can't get an official diagnosis simply because you can't afford to that is no reason to invalidate your self-diagnosis.
Enough said.
Reason number three (3) official diagnosis is often inaccessible systemically - AKA - the medical system is a nightmare to navigate on your own.
Even if you have an advocate, even if you've got a great PCP on your side, even if you've got like a nurse coordinator at your insurance to help ... it's still a nightmare!
Please be kind to yourself.
I have been in the process of getting diagnosed with Median Arcuate Ligament Syndrome, just so I can get it treated for over three (3) years now. (boggled chuckle)
A diagnostic procedure that went awry in February 2019? I only just had it redone last week ... Three (3). Years. Later. (calming breath in disabled American)
Am I still suffering from the symptoms of this condition? Yes, but now hopefully I finally have the official proof that I warrant surgical treatment.
Fingers crossed for me, please, that would be really helpful.
But the only reason I have gotten this far is because I have been DETERMINED to get help for this and navigating this process in the medical system and the insurance system has been a nightmare. (calming breath in overwhelmed American)
So yeah, official diagnoses are often really inaccessible due to the medical and insurance system.
It's not just financial, it's the hoops you have to jump through to get the right referrals, to get the right tests.
And then if the tests go awry (ugh), then to get proof that like, yes, I do need to have the tests done again yet differently and proving to your insurance that you need that. (exasperated exhale)
So, yeah, really inaccessible for a lot of people.
Type "Dr. Moi" in the comments, if you have, or are going through circumstances that require self-diagnosis.
Reason number four (4), if you were suffering from a chronic condition, be it physical, mental, or emotional, you have LESS SPOONS to spend on seeking help and support for jumping those hoops.
I often depressingly joked that I was a full-time patient for many years of my life. I spent the majority of my time and energy toward trying to get help and not actually getting it by the way.
I didn't have any time or energy left over to live my life.
I look back on those as lost years and I still grieve them to this day.
And I am very dissociated saying that because if I were to emotionally engage with that story right now, I would start bawling (dissociative void stares back).
Reason number five (5), doctors don't know everything.
The human body, the human mind, they are such complex things.
And, as a side note, something that worries me in this day and age is that there seems to be this overwhelming sense of "we have arrived and we understand things".
And while yes, we know so much more and we are in a much better position to care medically for the human body and the human mind than we were a hundred years ago.
That doesn't mean that another century from now humans, aren't going to be looking back on this time and going, whoa, that, that was, that was barbaric. Why were we doing that? That seems obviously a bad idea.
We are so far from complete understanding of the human body and the human mind. So far!
For those of you out there who are continuing to do the work to make scientific progress: Thank you!
But this brings me back to reason number five (5), sorry, went on a tangent.
Doctors don't know everything. They just can't.
The reason why, systemically, we have moved to like ... there's specialists. Like, there's a ... you have a digestive doctor, you have a neurologist, you have a gastroenterologist.
If you are a uterus-owning human ... those systems of the body do not exist in a vacuum.
The body is holistic. (holistic? noise??)
So there are so many things that contribute to a doctor not knowing everything.
First of all, if they are a specialist, like yes, they know a lot about one particular organ or system in the body. Great.
That almost automatically means that they're not going to be able to know about something else going on.
My chronic illnesses presented predominantly as gastrointestinal issues when I was fourteen (14) but they were SYSTEMIC issues.
My gastroenterologist diagnosed me with IBS and then was just like call it a day.
Fifteen (15) years later, I find out that I have Dysautonomia and a genetic connective tissue disorder that are causing said IBS.
If my doctor had been willing to see that maybe there's something more going on. Maybe this is beyond the scope of what I know .. I could have gotten to a diagnosis faster.
You as a patient, whichever doctor you were talking to, however helpful they have been to you in the past .. do not put them on a pedestal.
You are the authority on your body and it is well within your right to challenge their assumptions about your experience.
All of this, to say self-diagnosis is valid because finding the "diamond in the rough" doctor, after jumping through all of the financial, insurance, and then medical system hoops, to get to that one (1) doctor who knows your condition like the back of their hand to be able to diagnose you properly ... is so inaccessible.
It's a perfect storm of inaccessibility, our medical system. Whee! (/jaded)
So doctors don't know everything.
For example, it's a common misconception that blood pressure is a diagnostic criteria for Postural Orthostatic Tachycardia Syndrome.
It's definitely something they pay attention to but you diagnose based on heart rate not blood pressure.
And I can't tell you how many times I've like casually talked to a nurse or a doctor ..
And I tell them I have POTS - Postural Orthostatic Tachycardia Syndrome. And then they make a comment about what they think that means about my blood pressure.
And I'm like, oh no, this doctor doesn't know about this condition. And then that's a red flag for me to know to navigate this appointment with caution.
Because if there's something particular I need from them that is warranted because of my true understanding of my condition and not their (pause for delicacy) incomplete understanding of my condition ..
I need to advocate for myself more in that situation.
So doctors don't know everything = reason number five (5)!
And lastly, reason number six (6). And I touched on this a little bit earlier ... medical trauma.
I have diagnosed PTSD from (accessing the inner vault) ... gah this depressing to talk about, but like it only took one (1) of my negative traumatic medical experiences ...
I have had so many!
It only took one of them to get me the official PTSD diagnosis.
So talking with my therapist, we were just like, okay, yeah, you got medical PTSD. Let's just take it one memory at a time.
This is a very nuanced topic. I could spend months talking about medical trauma.
But the .. the two (2) aspects that I want to talk about today is:
One (1) the actual like traumatic experiences, like a procedure went wrong.
Surgery, whether it went wrong or not, is a traumatic experience for the body and you can have a PTSD response to it.
But then the other aspect is gaslighting.
And that is when a medical professional, regardless of their .. their ranking in the medical community, invalidates your lived and felt experience.
They tell you "it's all in your head".
They tell you "there's no way you could be in that much pain".
They tell you, "you were too young to be experiencing that".
Medical gaslighting is deeply traumatic. Trauma from procedures and or procedures gone awry is deeply traumatic.
It is very, very common unfortunately for those with chronic illnesses to have medical PTSD.
And because of that ... those of us with that experience, our willingness to jump through the hoops that I have spoken about today is incredibly low.
It takes a lot for me to be willing to jump through those hoops.
And actually more than once in coaching my .. my beautiful, wonderful clients, I've had to help them manage a situation where they need to jump through hoops.
But how do I do the jumping without hurting myself?
I'm honored that they trust me with that help.
I am so angry that they're in that position. I'm so angry that I've been in that position more often than not in my life.
I'm just so angry.
This has been a heavier video than usual, but those are really the six (6) primary reasons why self-diagnosis is valid.
If you need to self-diagnose in order to care for yourself properly (emotion & word traffic jam) ... you are more .. I .. I ... Validation City!
If you are someone who has experienced gaslighting from either medical providers or friends and family, I am so sorry.
I see you. It is so unfair. You are the authority on your experience, not them.
So there you have it. Six (6) reasons why self-diagnosis is both valid and important.
Like I mentioned, one (1) I'm not navigating my life and the medical system as a chronic illness, mental illness, and neurodivergent warrior.
I'm helping my amazing coaching clients do the same.
I'm a productivity expert and life coach for spoonies and the neurospicy.
Why? Because, like I mentioned earlier, I wasted too many years of my life being a full-time patient and essentially not living.
The main way I work with my clients is through my signature course, The Action Navigator.
It's packed to the brim with tools and techniques for mastering your time getting organized and offering yourself radical compassion as a neurospicy spoonie.
I can't wait to meet you.
Check out these videos next to learn more about my POTS and EDS.
Explaining What's Wrong With My Heart | How POTS Affects My Life
Explaining What's Wrong With My Joints | How hEDS Affects My Life
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I'll be back in two (2) weeks with another video. See you then.
Bye.